Feeling very unwell - do my blood results explain why? What to do next?

[Divine1990]

Hi

Mid August My NDT was increased from 2.5 to 3 grains. By the last week in September I began to feel what I describe as a 'bit off' , these feelings come and go. My partner had covid , I tested negative a couple of times. I did have a bit of cough and sore throat but that lasted only a couple of days. So blamed that for why I am feeling unwell (brain fog / fatigue).

Fast forward to recent weeks when I have felt very unwell experiencing symptoms such as extreme fatigue ( a shower could wipe me out for the day), a feeling of trembling inside my body, frequent episodes of nausea, weakness, brain fog, malaise, difficulty regulating my body temperature, intermittent spells of coughing, palpitations, weight gain and puffy eyes. I Only feel vaguely normal when I am sitting down.

I think my blood results may explain why???

Medichecks -Blood Test 25th October 2023 at 08.40hrs

Stopped biotin 7 days prior to the test. Last dose NDT taken 24hrs!! before sample.

CRP - 8.510 mgL ( range <3) - 2nd October Laser treatment on my face. Also stopped Low Dose Naltrexone before (3 days) and after (7 days) so this could be cause of increased inflammation. Was feeling unwell before procedure.

Ferritin - 152.00 ug/L ( 30 - 650). Recently completed 3 month supply of Ferrous Sulphate.

Folate - sample error

Vitamin B12 - > 150pmol/L (37.5 - 188) - I self inject EOD

Vitamin D - 141.0 ( 50 - 250)

TSH - 0.007 ( 0.27 - 4.2)

Free T3 - 6.6 ( 3.1 - 6.8)

Free Thyroxine - 22.7 ( 12 - 22)

TgAB - 38.90 ( 0 - 115)

TPO AB- 165.0 (0 - 34)

I continue to supplement Vitamins D + K2 , B complex, Magnesium, Bioadren, Folate.

I am waiting to hear back from my Naturopath.

In the meantime I would appreciate any advice. I omitted a dose of NDT the other day and I felt much better and was able to go out. I feeling very foggy brained today so apologies if this is a bit rambling. I just feel yuk!

Thank you in anticipation.

[pennyannie]

Hello Divine :

Well the raised iflammation is a factor that can down regulate T4 to T3 conversion.

Can you also share your previous blood test readings on NDT so we have some comparison -

What symptoms did you have on 2 + 1/2 grains and were these relieved on 3 grains ?

Did you go up in 1/4 grains and do you monitor yourself on daily blood pressure, pulse and temperature am and pm and have you seen any changes in these physical symptoms ?

What was your origin diagnosis and reason for your hypothyroism ?

[Divine1990 in reply to pennyannie]

Hi

2.5 grains

10th August 2023 - CRP 5.89 - <3

Ferritin 91.3

Folate 40.5

Vitamin B12 >150

Vitamin D 97.8

TSH 0.389

T3 4.5

Free Thyroxine 13.8

Tg AB 36.3

TPO AB 125

2 grains

2nd June 2023 - CRP 5.22

Ferritin 48.8

Folate 26.3

Vitamin B12 >150

Vitamin D 106

TSH 4.1

T3 3.4

Free Thyroxine 12.8

Tg AB 78

TPO AB 170

Ranges as previous post.

I often experience a degree of inflammation due to an ongoing wound to an area I am waiting to have removed.

NDT increased by 1/2 grain after 3 months. That is interesting, No I have never considered checking my BP, pulse or temp. When taking 2.5 grains I felt okish in as much I was able to take part in exercise and pilates classes although I would have to ' push through'. However still experienced fatigue, brain fog , weight gain etc just not as debilitating as I am experiencing now. I don't actually remember when I last felt properly OK.

[pennyannie in reply to Divine1990]

Ok - so guessing your TPO and TA refer to thyroid antibodies - and presume over range and that you're dealing with Hashimoto's Auto Immue thyroid Disease .

Everywhere I researched suggested ferritin had to be over for any thyroid hormone replacement to work and I know I now need my ferritin at around 100 - folate around 20 - Active B12 75 ++ ( serum B12 500 ++ ) and vitamin D at around 100.

Generally speaking when optimally medicated on NDT the TSH is low/suppressed with a T4 lower BUT with a T3 proportionately higher than when on T4 monotherapy.

Your T3 and T4 have slowly increased since June but jumped quite substantially on this last blood test - to a T3 at 96 % with a T4 @ 107% :

Are you aware of Hashimoto's and the ' flares ' and swings in symptoms and blood tests that you can experience ? thyroidpharmacist.com

There are some people who are with Hashimoto's who can't tolerate NDT as it's a natural hormone replacement derived from pigs thyroids dried and ground down into tablets referred to as grains - which can increase the immune system response causing more symptoms and these patients need to be on only synthetic T3 an T4 thyroid hormone replacements.

I've just looked back and see you felt very well only synthetic T3 and T4 with a T3 at around 5.50 with a T4 upper mid / range round 2 years ago - then everything seemed to go pear shaped again ?

[pennyannie in reply to pennyannie]

Just wondering were your vitamins and minerals optimal when trialling the synthetic T3/T4 combo - could they have been the stumbling block then ?

[Divine1990]

Yes I was on a T3/T4 combination previously but unfortunately the private Endo who was from the TUK list was still stuck in the view that suppressed TSH was an issue. So was reluctant to increase my dose of Liothyronine.The next doctor suggested introducing NDT and thats where I am at currently. I wondered about a flare up but wasn't sure how to determine what was due to a flare up or what was caused by being overmedicated or needing to maximise my vitamins etc.

It crossed my mind that NDT might not be working for me and that a longer trial of Liothyronine, prescribed by someone who was more understanding of the treatment would have been the wise thing to do? Today I didn't take my NDT and feel less foggy brained but I know this is not a solution in the longer term. I can't keep stopping and starting.

Would you suggest increasing any of my supplements based on these test results?

I am waiting for the results of my blood tests from my GP for Zinc , Magnesium, Copper and Selenium.

Thank you for taking the time to reply

[pennyannie in reply to Divine1990]

I think I gave you my targets for these core strength vitamins and minerals - above -

Folate historically seems high at 40 - but no current reading -

Just finished supplementing ferritin so that will drop a little - so keep an eye and try and maintain at around 100 :

Self injecting B12 - so that's looks about ok - and vitamin D - if supplementing maybe reduce a little -

If using any eye drops for your puffy eyes please ensure whatever yo use is Preservative Free even those Prescribed by the NHS.

Something out of character has happened if you track your T3 and T4 these past 3 results.

Your first result was a T3 at 3.40 with a T4 at 12.80 on 2 grains NDT

2nd blood test T3 at 4.50 with a T4 at 13.80 on 2 +1/2 grains NDT

3rd blood test T3 at 6.60 with a T4 at 22.70 on 3.00 grains

It dose seem as though you had a AI flare - do you sense them coming on - as I read some people stop their thyroid hormone medication for a couple of days so to try and offset the severity of the attack

Your antibodies are a little higher this time around - maybe some proof of an AI attack ?

[Divine1990]

It feels like a steady decline since approximately 22nd September 2023. It just difficult to work out what is happening when you feel so rubbish. Now I'm experiencing a wave of nausea. So frustrating !

Thanks pennyannie

[pennyannie in reply to Divine1990]

Please remembe to make sure you use the reply button to the person you are wriing to as otherwise they do not get notified you have replied and you may feel you have been ignored:

I just found this reply by chance and see it's for me - so and thank you and just wish I had all the answers :

[Divine1990 in reply to pennyannie]

Will do. Thanks

Brain fog and nausea not a winning combination. 🤦‍♀️😉

[Brightness14]

I was on 2.25 NDT for years and felt well but I had no other problems just no thyroid.

Have you tried 2.75 grains split into two doses, this may work for you. I have noticed that just one quarter can make the difference.

[Divine1990 in reply to Brightness14]

My NDT comes in a capsule unfortunately. I will definitely discuss this with my Naturopath though.. Thanks

[BB001 in reply to Divine1990]

Capsules can be pulled apart and dose split. I did this for 5.5 years with Thyro-Gold. If you tip the NDT out of a capsule onto a piece of paper ,(save for later), you'll then have an empty capsule. Divide a new 0.5 grain capsule of NDT between the two capsule and tamp down (round cross section pencil was good for this). When they are level you have a quarter of a grain. I just used to tip it into my mouth.

[Divine1990 in reply to BB001]

Thank you for that handy hint.

[Brightness14]

Sorry I never realised you were on capsules. Are these compounded for you, if so they could be altered, maybe. I hope that you find the answer. Your FT4 and FT3 are a little high but not by much.

[FancyPants54]

I know this thread is a month old, but I wondered how you were getting on now.

I have learned the hard way that too much NDT makes me feel so fatigued, miserable, unable to do anything and suffering with bad leg and feet pain and movement. I would never raise a dose by 1/2 grain at a time either.

I raised to 2&3/4 grains and felt horrible. I’m now in the process of reducing. I’m 4 weeks into 2&1/2 grains and feeling the effects of a dose change. But the first 2 weeks were quite good so I’m hopeful my body will sort itself out soon and feel a bit better. Then I think I’m going back to 2&1/4 grains. It was the move upward from that dose that started me feeling awful. I just put it down to the summer heatwave!

[Divine1990 in reply to FancyPants54]

Hi I was so fed up with feeling unwell I made the decision to wean myself off NDT. My Naturopath turned out to be not that helpful. As I had anticipated I quickly crashed and felt unwell again . This time it was different, falling asleep all the time , puffy face and eyes, weight gain, nausea and headaches. I have restarted Levothyroxine 50mcg and next week have yet another consultation with a new doctor to discuss my options. My dose of NDT had been titrated over a period of approximately 18 months (I think ) 1/2 grain grain at a time .

Just before the inevitable crash I did have approximately 2 weeks where I felt really well. Lots of energy .

So the saga continues. Good Luck on your journey.

[Incoguto in reply to Divine1990]

Have you tried 2.75? I mean going up by half grain which is 19 t4 and 4.5 t4 is a lot. I would also feel awful with high ft4 ft3 like that 24 hours after the dose.50 Levo is tiny in comparison to what you were on.

Hope you're doing OK x

[pennyannie]

I think you have confused me with the o/poster :

I do not split my dose of NDT and seem to need only 1 + 1/2 grains daily :

[BB001 in reply to pennyannie]

Sorry, I thought I was replying to the original poster! Comment moved to correct place. Thank you for letting me know.

[pennyannie in reply to BB001]

No worries :

[BB001]

Do you split your daily dose? 1.5 grains in morning. 1 grain in afternoon. Or 1.75 grains in morning 1 in afternoon. Or 1.5 grains in morning, 1.25 in afternoon. Experiment by doing each split for at least 2 weeks before assessing success.

Take 4 hours after food and don't eat for one hour.

Don't take magnesium, calcium supplements within 4 hours either side of thyroid meds. I took the supplements at night.

I would try 2.75 grains as your results show you are now near top of range in both fT3 and fT4.

Are you gluten free? TPO antibodies are raised and it will help stop the attack on your thyroid.